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Lewy Body with Parkinsonism- how to deal
My mother has both Lewy Body Dementia and Parkinsonism. She cannot walk, bath, toilet, dress on her own. She is very overweight which makes helping her more difficult. She sleeps most of the day. She was an avid reader, knitter, baker but none of that now. She has very few tremors besides her legs freezing when she tries to walk. Her cognitive decline shows its ugly head more often. My father is her caregiver. He is 84 and she is 83. Home health keeps coming for their short stints then dismissing her for a while then a new referral comes in for another bit. How do I know when to encourage my father that she needs to be somewhere other than home? How do I convince him? He rants at times at my sister and I. He demands we come and give him respite. We do, but we also work full time. My sister is next door but I am 2 1/2 hours away. She has a follow up neurologist appointment this week. I am hoping we get more direction from that. Sorry about the rant. To my surprise I have found great comfort here. Thank you.
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@dedhambeth Welcome to Mayo Clinic Connect! This is a helpful public forum for people to ask questions about their health journeys and those who have experienced the same journey to give answers. Your parents’ ages and health are making it very difficult for them. I would suggest that you ask at the neurologists’ office for the names of nursing homes where your mother can get the help she needs. You could then visit these places to see if they would be good for your mother. Then, maybe, you could take your father for a visit.
How long has your mother been in bed?
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2 Reactions@becsbuddy Hello, thank you. She is not completely in bed, yet. Right now she goes from bed to wheelchair to recliner and back into wheelchair to come to the table to eat and in the wheelchair to be taken for toileting.
I'm reading this, this morning, and it reminds me of shades of the same exact thing we went through with my neighbor who needed full-time care but her husband wouldn't do it. He was part of the "old school" regimen that wanted to take care for her on his own, plus he was dealing in a lot of denial about the stage of her disease. She desperately needed help outside of what he could give her. In doing so, that would help him. Fast forward, now he has the full time care she needs but it took a long time to convince him. With your sister next door, but you all work (I get it), you really have no choice but to get the level of care you need for your mom and for your Dad. It sounds like he's from the generation of "keep them home" which simply means a much higher level of care. Two daughters of another neighbor to my right have full time care for their father now, because they don't live local, have to travel in, have all his meals arranged, they manage his finances remotely, get the care, pay the care through the agency they hired, but they have people during the day and night. It's either dedicated home care for your mom, or a nursing home (from the above post), and/or a facility that can care for her 24 x 7. BY the way, my next door neighbor ranted and raved too, every day, when his wife wouldn't bathe, wouldn't respond to him, and he would always have to run over and get me to help her. We treat yhour parents with dignity, and when the time comes to help them, both you and your sister can figure out the best approach to get the level of care your parents need to be able to stay in their home.
Courage to make the decision. Clarity to know what to do. And God's help, shining his light helping lead the way, in all we do. Best, Karla
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